Scope Done... "Very Sick" but still waiting for Cause

After a loooong night of a "clean out" that included "Go Lightly" through Sam's G tube for 12 hours and IVIG with monitoring vitals every thirty minutes until 1am, we had the upper and lower endoscopy procedures done late Tuesday afternoon. The GI doc who performed the surgery talked to us for awhile after. His initial findings from the scopes were that her esophagus and stomach looked pretty good. Her intestines looked fairly "beat up" with some swelling etc. but he attributed this to that she "has been through a lot" through transplant. Unfortunately he said her colon most certainly looks "very sick." Ulcers, discoloration, inflammation etc. He took several biopsies throughout the procedure and has sent them to the lab. He can't diagnose from a scope on it's own but did think it looked like either infection or GVHD.

The procedure overall went fairly well. The night preceding and the typical hospital logistics were frustrating per usual with an initial surgery timeframe of 8am - 11am and then actually taking place at 2:15pm. All while Sam had not eaten since 6pm the night before. We did end up getting the anesthesiologist we requested and she was MUCH more empathetic and in tune with Sam's age and the toll these accumulative "procedures" can take on a child her age. She gave her versed and propofol in pre-op. She let me carry her down the hall and said if she protested when I handed her off, she would let me come into the operating room until she was safely "asleep." She really was kind. Sam was basically "mush" while I carried her and they came and got us before she opened her eyes so I could pick her up immediately and nurse her when she woke. This part went much more smoothly than the previous two experiences.

At this point we are still waiting for definitive answers. The only thing that has been ruled out is GVHD. This is good in a sense because having GVHD start after day +30 puts you at higher risk for it being a chronic condition which many have to deal with. Unfortunately some of the other "scary" options like CMV (seems to be the front runner as docs' guesses), EBV, or adenovirus have not been ruled out. Our transplant doc asked the head GI doc to take a look personally at Sam's smears and they have been sent out for molecular analysis. We will be basically holding our breathe until we hear the next steps. For now though, we are home again and Sam is doing pretty well when I can keep her cramping/pain from ulcers etc. under control.

Thanks as always for all the kind words, encouragement, and support! Hoping for answers with effective treatment soon!